One patient with glioblastoma still alive nine years later
by strugglecontinues on Thu May 21, 2009 12:00 AM
I need some honesty here. Please reply.
Age 60, diagnosed 2 months ago. 60% or more of the tumor REMAINS after surgery. Right-frontal lobe, into left (via corpus callosum) mid-brain involvement (hypothalmus, third ventricle). 5cm x 2.5cm x 8cm. Otherwise good health.
Radiation\Temodar now. Temodar to follow.
What do your doctors tell you about prognosis about prognosis of high-grade gliomas where surgery was not very successful?
by predisposed on Thu May 21, 2009 12:00 AM
I got this off pubmed. Seems like there isn't a lot know.
J Neurooncol. 2007 Feb;81(3):295-303. Epub 2006 Sep 26. Links
Department of Medical Oncology, Istituto Oncologico Veneto-IRCCS, Padova, Italy.
Anaplastic astrocytomas (WHO grade III) constitute about 10% of all gliomas. Definitive data on predictive and prognostic factors are lacking for these neoplasms that are considered the most enigmatic entity among the whole spectrum of astrocytic tumors because of their unclear biologic behavior and variable clinical outcome. Currently, only few factors have been identified as useful for prognosis of anaplastic astrocytoma: age and Karnofsky Performance Status. Attempts have been made to identify biological prognostic factors for response to therapy and clinical outcome, as well as potential targets for new therapies. Potential prognostic biomarkers concern tumor suppressor genes on chromosome 9q that are involved in the RB1 pathway; PTEN, the PI3k/Akt/p70s6k cascade, survivin gene, Formylpeptide receptor, minichromosome maintenance protein 3 and genes on chromosome 7. Furthermore, some angiogenic factors (e.g. hypoxia-inducible factor-1alpha, vascular endothelial growth factor and scatter factor/hepatocyte growth factor) and the methylation status of O6-methylguanine-DNA methyltransferase gene (one of the main effectors of DNA repair system) are emerging novel putative determinants of prognosis. Moreover, recent studies on magnetic resonance imaging characteristics give prognostic significance to the presence of necrosis and enhancement. The state of the art pictured here underlie the recent interest on gene expression profile to identify aberrations useful to understand the biologic behavior of astrocytic tumors. Our knowledge in this field is still limited, and remains an issue of great concern.
First part is helpful, the rest is pretty technical. But they don't say the size of the tumor or the amount removed at surgery affects survival, which is kind of weird.
Best of luck.
This is from a continuing medical thingie on astrocytoma. Technical language makes for heavy slogging. But they say the prognosis for Grade 3 anaplastic astrocytoma is 2.5 to 5 years.
by 570sheila on Thu May 21, 2009 12:00 AM
Please rember....NO ONE knows when your time is up.I know a gentleman who was to have died over 14 years ago with Luekeima....today he is still fighting the fight and God Bless him,...WINNING. He tells me he is NOT ready yet to leave his wife, family and freinds. POSTITIVE thinking IS very important.....keep fighting the fight....never give up. Continue to search for better doctors and more advanced care then what you are getting....travel IF you must.....but FIGHT. Rember if you are getting the best care where you are, there IS better somewhere else. More advanced and more knowledge....Google and do your research....Don't give up....POSTITIVE THINKING.
God Bless, Sheila
by heart_and_soul on Thu May 21, 2009 12:00 AM
Yes it helps to try but there is simply no place in my head for thoughts of failure. Nobody should lie down and give up. Definitely put up your dukes and give this disease everything you've got. But don't make it into a MORAL battle, good against evil. It's biology and chemistry. It's not like some people 'deserve' to win and others don't. Wonderful people who wanted very badly to live, don't. They never gave up but they died. Some others who seem not to care that much about life, live on. It's pretty hard to accept but it is at least fair. The same rules apply to all living creatures.
I sound hard hearted and that is so not where I am coming from. I have massive sorrow and I am already grieving for my son with his GBM. I just don't want to make it even worse by casting it as a battle of his worth against disease. It's hard enough, as is.
by Amythest on Thu May 21, 2009 12:00 AM
There is not any thing hard hearted about you! As a mother of a daughter going through this...I know your grief. Hang in there.
Honestly about the Grade 3 Anaplastic Astrocytoma...or any of these tumors, I've read that the more of it they can get the better. Also, the radiation and chemo can really make a difference too. Our daughter had only 75% of AA grade III removed and the radiation and chemo got rid of the rest of it that they could see. It didn't show back up again for nearly eight years. So don't lose hope.
by strugglecontinues on Fri May 22, 2009 12:00 AM
On 5/21/2009 Amythest wrote:Sarah,There is not any thing hard hearted about you! As a mother of a daughter going through this...I know your grief. Hang in there. Honestly about the Grade 3 Anaplastic Astrocytoma...or any of these tumors, I've read that the more of it they can get the better. Also, the radiation and chemo can really make a difference too. Our daughter had only 75% of AA grade III removed and the radiation and chemo got rid of the rest of it that they could see. It didn't show back up again for nearly eight years. So don't lose hope.Amythest
Please, can you tell me what kinds of treatments, side effects, and quality of life has your daughter had in those 8 years?
thank you very much.
by Amythest on Fri May 22, 2009 12:00 AM
Our daughter had radiation and Temador. Temador was still new at the time, and she took it in the pill form. She lost most of her hair from the radiation and still has some problems with her right eye being too dry. But most of her hair grew back. She was sick with the Temador. But then, after the treatments were over, other than thinking and moving a little slower she has had a wonderful quality of life. None of us would trade the time we have had with her for anything. Carolyn was 26 with a daughter 7 and a son 4. They are now 15 and 12.
Don't lose hope. Each one of these tumors and each person is different. Things can really look bad, but still work out. As Sarah and others have said, you must keep fighting.
Take courage...and God bless your family
Some one has started a new thread about the effects of Temador that you might want to read. Also you might check back over some of the old threads to read what others have experienced with the radiation and temador.
by predisposed on Fri May 22, 2009 12:00 AM
Don't get me wrong, I have nothing against positive thinking.
But you know, if we could control reality with our thoughts, we would all be rich and young and beautiful and never get GBM at all.
But the problem with thinking you can effect the outcome of GBM with positive thinking, is it blames the folks who go ahead and die of GBM for their own death. They didn't do the positive thinking thing. To me, this is cruel.
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If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
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